PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)
PART VI – CURRENT STATE & FINAL WORDS
PART VII – SILENCE OF THE MOTHERS (please see here)
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PART VI – CURRENT STATE & FINAL WORDS
MY DAILY LIFE AFTER TREATMENT
While life goes by, a significant part of my life is spent in hospitals. After my treatment ended, I went for check-ups every month for a year. Immediately after the check-up, I had to do the next check-up, make appointments, and donate blood for creatinine measurement before CT. The following years passed in the same way.
Meanwhile, other diseases entered my life. I last had a lung infection over a year ago. I had pneumonia 2 months ago. A pulmonologist also joined the doctors I go to regularly. I have had thyroid checks for 15 years. I also go to the psychiatrist. A few weeks ago, I had a problem in my right eye. I will go for check-ups for that from now on.
My sister jokes that “I get better healthcare than the Queen of England” 😊
From the first year onwards, among all the examinations, you always think about what will happen in the next examination. You feel more comfortable having annual check-ups. It is a constant reminder that not having a stomach requires careful eating and drinking.
My home in Ankara has become synonymous with hospitals for me. I adjust the medical appointment dates accordingly so that I can go to the summer house during summer months.
Low or high values in some of my blood tests affect my depression. I say “come one by one” but they don't listen to me :-) .
While I was preparing this article, my brother came from out of town to visit me. I had thyroid control and he supported me. I had a thyroid biopsy two days ago. The endocrinologist showed my nodules on ultrasound and said it looked like a potato field :-) Sweet potatoes? :-) Purple potatoes? :-) Yellow potatoes? :-) .
We started medication because my T4 level, one of my thyroid hormones, has been low for a long time. These low levels cause extreme fatigue and I feel dizzy when I stand up. My doctor asked for a check-up after 2 months. I have been on an iodine regime for 8 months. It was found to be extremely high in the tests. Still high :-( It causes low T4 hormone.
My life in Ankara is quite routine. I'm usually at home and spend time with my hobbies. I never watch television. I love listening to music. Sometimes I go on a song hunt You also do things that make your life better.
I love being in the summer house because there is no hospital on the island except for the health center and one family doctor. I feel free because I don't have to go from hospital to hospital.
Another thing that makes me happiest at the summer house is taking care of and feeding stray animals. Last summer, I stayed on the island for the first time for nearly 5 months. I was doing pretty well. I have an interesting relationship with stray animals. When I come across a cat I haven't seen before while returning from somewhere, I say, "Come on, let me feed you." They walk beside me and come with me.
I don't swim much in the summer. In September and October, I walked by the sea a lot and collected stones and seashells. One day, 3 pitch black dogs and 1 brown dog in the distance on the empty beach started running towards me, barking. They didn't attack me, they just surrounded me, put their paws on my chest and asked me to pet them. One of them stuck his head inside my fleece coat. I loved them all, I talked to them. Another day a dog hugged my legs. 15 min. He didn't leave me 😊 I love them so much.
I have walked away from most of the toxic people in my life. This can be perceived as relative loneliness. But it is not. Being alone is not a problem for me, except for the absence of my mother. I would rather be alone than exposed to toxic people. I never get bored, I have so much to do. In the summer, I make home vinegar from my fruits. I don't use it, but my brother likes it very much. I give away some of it. Last summer I tidied up the front yard of the house. It took me a lot of time due to my fatigue, but I was happy while doing it.
One of my dearest friends told me that I was a geek. I like and enjoy doing research on a subject that I am interested in and curious about. I am not antisocial, on the contrary, I can communicate with people very quickly. Mine is a conscious loneliness. Because I'm tired of people's selfishness, their efforts to present themselves as something they are not and cannot be, and their desire to dominate me. My independence is very important to me and I do not like and do not want people in my life, who try to interfere with my personal space.
After all, we are members of a society and we have to do many things even though we do not want to. The important thing is to minimize these as much as possible and focus on things that will make us happy. Sometimes doing nothing is also an option :-).
LAST WORDS
The first thing that keeps me alive is that my mother took very good care of me, her support and the support of my siblings, the second is having access to very good doctors, and the third is having high morale, according to my oncologist.
One of the reasons why I tell my story of signet ring cell type stomach cancer, which has a low survival rate, is that we always have a chance of recovery, no matter what type of cancer and at what stage it is.
I know there are some of you who are going through much harder things than me. We are not just statistical data. We may surprise some scientists by not being where these data indicate, and we may change the statistical data with the help of advancing medical science. We must believe in our own power.
In this struggle, patients should also demand social support assistance. They should be able to access advanced examinations and specialist doctors as soon as possible, regardless of the disease. The first priority of governments, including my own country, regarding health should be people's right to life and their fulfillment of these requirements.
Since cancer treatment is very long and financially challenging, patients in need should be supported by the governments. I guess I'm asking for too much
Another important issue is, of course, social awareness. For this reason, I find my sister Sevtap's work in this direction very important. I really appreciate how passionately she works for the platforms she leads.
Thank you very much for listening to me in this long story. I am very happy to be among you who share your illness stories here. Stay healthy, happy and well.
Sevtap and I at the airport, when she came to visit us in Turkiye
PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS
PART VI – CURRENT STATE & FINAL WORDS (please see here)
PART VII – SILENCE OF THE MOTHERS (please see here)
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PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS
MY ONCOLOGIST TAKES ONE YEAR UNPAID LEAVE
During my 6-month check-ups, my oncologist took a one-year unpaid leave from the hospital. I was so sad and shaken. Since my doctor was very important to me, I could not imagine his absence. Due to the stress I was experiencing, I developed skin break ups in my abdominal area.
Fortunately, he opened a private practice before my next 6-month check-up. Now I can make an appointment without any problems. During the years when my oncologist was practicing at the hospital, he would also perform examinations at 5 or 6 am in the morning due to lack of time. I went to him a lot in these early hours.
BEING STUBBORN WITH MY DOCTOR :-)
I have never delayed my check-ups. But sometimes I get stubborn with my oncologist about the tests. He is very detail oriented and does not miss the smallest thing. I didn't want to have some tests done. But I never succeeded :-) Keep trying :-)
HOW DID MY ANNUAL CHECK-UPS DECREASE TO 3-4 MONTHS AGAIN?
About 3 years ago, during my check-up after my mother's death, my CA 16-19 levels, one of the tumor markers, were high. Thereupon, a special MRI was performed on the liver, pancreas and gallbladder area and a gastroenterology consultation was performed along with other tests. Nothing untoward happened, but the check intervals were reduced to 3 months. My doctor only agreed to take a 4-month break at my request so that I could go to the summer house in the summer.
All my tomography and MRI scans were performed at Hacettepe Hospital, with a few exceptions. But 1.5 years ago, for the first time, I could not find a paid private MRI day. They could give a date 3 months later. I had to have it done at a private imaging center for a very high fee. And I uploaded the previous MRI image and the result report to the imaging center's system.
MRI SHOCK
A few days later, the results arrived in my e-mail. When I read it, it said that I had widespread metastases in many parts of my liver. This time I really had a big shock. At that time, I was a devastated person who could not accept the death of my mother and was experiencing the greatest pain of my life. I also had panic attacks that started with my mother's illness.
I made an emergency appointment with my oncologist. When I went, he had already read the results of the examination that had been sent to his e-mail. He told me that stomach cancer will not metastasize like this after many years. He called the imaging center and asked them to examine it again. He asked me to get the MRI images from the center and asked for them to be examined by a Professor Radiologists at Hacettepe Hospital.
When I returned home, I compared the areas called metastases with my previous MRI result. They even interpreted the hemangioma (a benign growth formed by the expansion of blood vessels) that had existed in my liver from the very beginning as metastasis.
When I went to the Imaging Center, they asked me to come back 3 days later for the MRI CD taken there. I said that I did not have time and that I wanted both the CD and the MRI results immediately. And I reminded him that the previous MRI images were loaded in the system.
Frankly, I was annoyed that 3 employees sitting next to each other asked me to wait 3 days to load a simple CD with my imaging results. If I received the CD late, it would cause me to lose time as it would be re-examined at Hacettepe Hospital. This was a waste of my time.
Half an hour later, one of the employees brought the corrected report and the MRI CD. I said I wanted to meet the doctor. They refused, but I insisted. I couldn't remain silent on such an important issue. Our lives are filled with examinations and such a doctor's error was not acceptable.
The doctor came and explained the report to me, stating that she did not interpret the lesion in the right adrenal gland as problematic. However, this didn't matter to me anymore. The MRI would be re-examined at Hacettepe Hospital. Not only would this bring another financial burden, but the consequences of my psychological state would not be easily resolved.
I asked her, "Can you imagine what kind of mood a cancer patient would be in when they see such a result?" I also asked her if this was a control MRI and what she compared it with to reach her conclusion. She apologized to me and said that her staff did not inform her about the previous MRI. I said, as a doctor, I would expect you to ask me for this even if I did not provide the previous images. I told her that I was suffering from major depression and panic attacks, and that such events caused my depression to escalate.
She apologized again and said she had learned her lesson.
I wish she hadn't learned her lesson from me.
HACETTEPE HOSPITAL RADIOLOGY DEPARTMENT
We have the opportunity to choose the doctor when we have an MRI at Hacettepe Hospital or when we want the ones taken outside to be re-evaluated. Especially radiology professors are very good in their field. When one of these doctors evaluated the MRI, he stated that no mass or distant metastasis was detected in my liver, however, there was a millimetric lesion in the right adrenal gland and a close follow-up was recommended.
There are many diseases originating from the adrenal gland. Adrenal hyperplasia, adrenal Cushing syndrome and pheochromocytoma are examples.
The reason why I mention these is that while one doctor gave an examination result in the direction of metastasis, another doctor reached the correct conclusion with a detailed examination to indicate which disease the lesion in the adrenal gland indicated.
Since my oncologist is very careful and experienced, he examines the imaging results performed outside Hacettepe Hospital and often has them re-examined at Hacettepe when necessary. You can see the benefits of re-examination or re-interpretation of medical results.
MY 3RD SURGERY
As a result of the re-examination performed at Hacettepe Hospital, my oncologist referred me to a professor who was an endocrine surgeon at the same hospital. I had likely an adrenal gland-related disease that can be detected very rarely and can cause high blood pressure that does not decrease and sudden deaths due to reasons such as stroke and heart attack.
If I didn't have cancer and didn't have regular checkups, it might not have been detected, either. Especially considering my hospital phobia...
The endocrine surgeon listed the tests I needed to have first. Since the adrenal gland is an organ that has nothing to do with the kidney and is responsible for the production of many important hormones in the body, the tests were generally related to hormones.
When the tests were completed, my surgery was performed 1.5 years ago. My doctor performed my surgery in a private hospital, not Hacettepe Hospital. The doctor said that he would first start with laparoscopy and then convert it to open surgery depending on the situation. Ultimately, it was converted to open surgery. My brother, who lives in another city, came for my surgery. We used the hospital's companion service for a companion to stay with me.
Before the surgery, I talked to the head nurse and told her that I could not eat sugary things because I did not have a stomach, and I asked for my meals to be arranged accordingly. But since they didn't take this into consideration, dishes like sugary pudding were coming and I couldn't eat them. My doctor said I can't discharge you unless you eat something.
Of course I couldn't eat it. I had no appetite at all. I stayed in the hospital for three days, but the painkillers made me confused. Those days felt like a month to me. My close friends from my workplace came to support me both in the afternoon and in the evening.
A week later, my brother had to return because of his work. We were alone at home with my two cats. When I returned from the hospital, one of my cats, Monica, never left me alone day and night and always slept next to me. She usually sleeps in her bed on the floor of my bedroom.
(Monica)
After the surgery, a hematoma (blood collection) formed in my stitch area and my doctor said it would go away over time. About 10 days later, dark blood started leaking from one of the laparoscopy holes. I went to the doctor and he explained to me how to drain this blood. I did what he said twice a day for about 10 days until the discharge stopped.
What was more difficult was running between buildings to perform the procedures when the pathology report came out and my oncologist wanted it to be re-examined at Hacettepe Hospital. I had a balance problem, I was walking swaying and I was in no mood. Then, my thyroid check was started immediately and a biopsy was performed. As someone who just had surgery, it was very tiring.
Then my 3-4 month check-ups continued. At my last check-up, my oncologist requested so many tests that I was going to 3 different hospitals a day. And finally I went back to yearly check-up schedule.
PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)
PART VI – CURRENT STATE & FINAL WORDS (please see here)
PART VII – SILENCE OF THE MOTHERS (please see here)
PART VII – SILENCE OF THE MOTHERS (please see here)
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RETURN TO WORK
I was a Civil Servant working as a lawyer at the headquarters of a large institution with a very high workload. Even though I had a long sick leave, I returned to work quite early.
When I started working, our female General Counsel, who was our supervisor before my illness, was very understanding, helpful to me, and supportive. But the attitude of some of my colleagues, especially their lack of empathy, was annoying. I didn't care about it at the time.
It was great to get together with my favorite friends at the workplace. We were having a good time together. I regained my old joy. I also started to do things that I couldn't do before. I was making time for myself, going to concerts and having fun with my friends. We also took tennis lessons together.
MY TREKKING ADVENTURE
When I felt good physically, I started trekking. It was very difficult at first, then I started walking as good as my group mates. We were having so much fun. Every week we were walking up the mountain on a different track and getting clean air. I attended regularly for 2.5 years. Once we got lost as a small group in front. Our situation was very funny 😊 One of our guides found us.
MY WORKPLACE AND MY PSYCHOLOGY
I think it was 3 years after my treatment when our supervisor retired. One of my colleagues was appointed in her place. Let’s face it; lack of understanding and accommodations may be a reality for employees affected by cancer at the workplace. I struggled for a year. I felt that even going to the hospital for my tests could be a problem. And my psychology collapsed. As someone who has faced death, my tolerance limit has fallen very low. It was like I was being punished for having cancer. After a nervous breakdown at work, I went to a psychiatrist.
Even though the supervisors changed, I continued to feel issues until I retired 5.5 years ago. I struggled constantly in the last years of my working life.
(I lost 10 kilos after this photo taken prior to my workplace experiences. Both my psychology and my body were hurt. My mother had worked hard for me to reach this weight after my treatment.)
MAJOR DEPRESSION
My desire for life decreased, I became someone who couldn't sleep, couldn't laugh, didn't want to do anything, and cried over ridiculous things, even though I didn't even cry when I was diagnosed with cancer. Also, the idea of jumping from the 11th floor was constantly floating around in my mind. I didn't have a suicidal idea, but it was involuntarily messing with my brain.
That's why I kept myself away from windows. If we ask why the 11th floor, the answer is that it is the floor where my office is located.
After listening to me for a long time with my questions, the psychiatrist said, "In cancer patients, the psychological process is experienced as REBELLION – DENIAL - DEPRESSION and ACCEPTANCE, but it seems that you have directly moved to the acceptance stage."
He explained that my problems at work had triggered this process that I was experiencing incompletely, and that this process that I had to go through before was now starting to be completed.
He diagnosed me with major depression and started me on medication. He also gave me a 2-month sick leave report and asked me to stay away from my workplace and reminders of negative experiences.
Later, a male colleague of mine at work said that there were no tests for depression, how could doctors make the diagnosis without a test, that there was no such disease, that I had actually lost my determination to work, and that I would get better if I worked harder. Isn't it a joke?
Some people confuse unhappiness with depression. And the most common thing I'm told is that everything ends in the mind and that I shouldn't worry about it. Such people: please do not try to give us advice. Depression is not a whim.
Unfortunately, I have had this disease (depression) for 10.5 years. Because for the reasons I will try to explain, my depression can escalate and, according to my psychiatrist, it is recurring again and again. I go back to the moment I was diagnosed with cancer. After my mother's death, I went to therapy for nearly two years. I want to get better, but I still haven't been able to do it.
(The photo above was taken before I retired. I met up with my friend of 25 years who came from out of town. I was happy to see my beloved friend, but I couldn’t even smile.)
CAN I HAVE A HOBBY IF I HAVE A PHOBIA?
When I started to feel a little better after being diagnosed with major depression, I took up hobbies to keep my mind busy. I dealt with things like purse designs, wood painting, sewing, knitting, and watercolor painting. This felt good to me. I was giving the bags as gifts to the people I loved. I still continue with old and new hobbies.
MY SECOND SURGERY
In the ultrasound taken during a check-up in the fourth year after my treatment, the assistant doctor detected 3.5 cm mass in my ovary. I experienced another shock. MRI showed that there was no such mass. But my doctor wanted me to have surgery for preventive reasons, saying that it could reduce my future potential cancer risk. It was a very mild surgery compared to my first surgery. My sister accompanied me in the hospital. We had so much fun the night before the surgery. Thank you my dear sister :-)
OUR RIGHT TO SICK LEAVE
We have up to 12 months of paid sick leave for each illness and up to 36 months for diseases like cancer. After one year, this right is renewed. For this, a committee consisting of three doctors must report.
I was experiencing depressive attacks from time to time during my severe depression. By the way, I mentioned above that I had a second surgery. When I fell due to neuropathy, I broke my ankle ligament and there was also a fracture where it broke. Since I could not work in these cases, a sick leave report was given. From time to time, a report was given by my oncologist.
I mostly experienced issues at work because of my sick leave. They also suggested that I could retire due to disability. As a lawyer, I knew my rights. It was frustrating. I retired 9 years after my treatment because my work was affecting my health negatively.
AN EXAMPLE OF MY DEPRESSION ATTACKS
Orthopedist who thinks he is an endocrinologist: At one point, I had bone pain throughout my body, mostly in my hip bones. I went to an ORTHOPEDICS professor in a private hospital. Films were shot and other examinations were conducted. The doctor ordered a PET CT scan because I had intense bone pain and because of my medical history. I discussed this with my oncologist before the scan, and when he approved, I got the scan.
As a result, only a minimal increase in retention in the thyroid was noted. The doctor told me I had thyroid cancer. I found myself in the corridor with the report in my hand and stood there again. I am someone who has had my thyroid checked regularly for 15 years. Where did this come from?
I took the results to my surgeon who performed my stomach surgery at the first opportunity and my doctor said the results were great. I didn't have cancer or anything. It is an organ that retains radioactive substances given to the body due to its thyroid function. It was a huge mistake and even arrogance for the orthopedist to diagnose me with cancer on a subject that had nothing to do with his field of expertise.
My psychiatrist said it took me back to the moment I was diagnosed with cancer. And he named another doctor, saying that the most cruel doctors come from among surgeons.
PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)
PART VI – CURRENT STATE & FINAL WORDS (please see here)
PART VII – SILENCE OF THE MOTHERS (please see here)
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PART III – LIFE WITHOUT A STOMACH
AFTER TREATMENT After my treatment, my pain and fatigue continued for a long time, as seen in my photo. It took me a long time to feel good physically. It was not possible to fully return to the past anyway.
After the end of the treatment, I had monthly check-ups for a year. In the following years, we started check-ups every two months, then every three months, every six months, and then after 6 years, we started annual check-ups. After the twelfth year, I went back to 3-monthly check-ups all over again.
I want to start by saying that a lot happens. Since our digestive system loses its most important part, digestive and excretory problems begin. Not being able to drink water, difficulty swallowing, taking external supplements throughout life (because the food we eat needs to be processed in the stomach in order for the body to produce /absorb vitamin B12 and iron), bloating that sometimes starts with the first bite, not being able to vomit, gas problems, and completely eliminating some foods from your life.
Since there is no gastric valve (actually known as a valve, it is a condition that occurs when the muscles at the entrance and exit of the stomach are stretched), when you bend over for a long time, the food you eat or acid secretion comes into your mouth, and acid splashes cause great pain in your throat, especially at night. And most importantly, experiencing dumping syndrome is one of the first things that come to my mind.
And to patiently answer the question of where does the food you eat go if you don't have a stomach?
I would like to detail some of these to make them more understandable.
Dumping Syndrome: This is a very important syndrome we experience. The reason is that since we do not have a stomach, the food we eat passes directly into our small intestine, and since absorption begins immediately in the small intestine, if you eat something that will raise your blood sugar, your blood sugar will suddenly skyrocket.
The pancreas secretes insulin to lower high blood sugar, and this time your sugar drops too low, so you go into hypoglycemia. During hypoglycemia, my back feels like it's on fire, I start shaking and feeling extremely dizzy. To fix this situation, you need to raise your sugar again. You return to normal about 20 minutes after eating sugar.
Not being able to drink water: Since I don't have a stomach, when I drink water it goes straight down and causes pain. To avoid this, I have to drink it in small sips. Water is incredibly unpleasant when drunk this way. I was drinking fruit compote with very little sugar for fluid intake. Then I started drinking iced tea. At least it didn't require small sips since it had a taste. Even though I can now drink a few sips in a row, I still cannot drink water.
I'm not alone in this. There are many patients in my situation. One person said that he started drinking water after 15 years. I hope I can drink it too one day.
And I will be free from the pressure of people who constantly tell me why I need to drink water and say that I cannot live without water. I want to ask them. If you can't live without water, how have I been living for 15 years?
Difficulty swallowing: This is actually pretty detailed. In short: The muscles required for swallowing in the esophagus do not stretch, and the food you swallow remains stuck at the beginning, middle, and sometimes at the end of the esophagus. I sneeze repeatedly as a result of my body's reaction, especially if I swallowed quickly. People generally think that I sneeze because I am sick.
The worst thing is that the thing you swallow reaches your windpipe before it enters the esophagus and you are left breathless, trying to stay calm and expel what you ate, bloating, not being able to vomit (10 years later, I started vomiting by stretching my abdominal muscles), even after 15 years, it is more common than before.
Imagine experiencing the same symptoms repeatedly while eating something.
One day, while I was waiting in line for a CT scan at the hospital, an old lady sitting next to me said that she could only eat one apple the night before. I waited 8 years to eat an apple. I still can't eat an apple at once.
And those who force me to eat and eat sweets outside my immediate circle. This can be very overwhelming and actually shows that they are not really listening to me even though I have explained my situation over and over.
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)
PART VI – CURRENT STATE & FINAL WORDS (please see here)
PART VII – SILENCE OF THE MOTHERS (please see here)
PART II – LIFE WITH CANCER AND TREATMENT
MY SURGERY PHASE
Eight days after the diagnosis, it was time for surgery.
In my surgery, which started in the morning, my entire stomach, my duodenum, a part of my liver (because the 8.5 cm signet ring cell type tumor in my stomach had invaded my liver), and my gallbladder was removed (because it was understood that I had a stone in my gallbladder, so they told us to take it while I was on the operation table). I also had 25 lymph nodes removed. It was a very long surgery. I was first taken to intensive care for a few hours, and then to my room in the evening. I remember wreaking havoc in the intensive care unit because I was in pain.
During this time, my family's wait must have felt like a century. I would like to thank all my friends who came from out of town and from within the city and supported my family for my surgery.
I spent the first night after my surgery very comfortably. It was like I was in a sheltered white tunnel. I had a pump for a morphine-based painkiller connected to my lower back with an epidural. I was told to press if I had pain.
POST-SURGERY COMPLICATIONS
Two days after my surgery, I started having trouble breathing. Chest X-ray film was taken. The pulmonologist said that there was fluid accumulation around my lungs and that he would remove this fluid without hurting me. A lot of bloody fluid was removed from my left side and I started breathing normally again.
Then my kidneys stopped working. I took only serum for 7 days after the surgery. Everywhere was full of cables, pipes, probes, etc. One of these probes was going down from my nose to my surgery site. The amount of serum I received was compared with the amount of fluid in the bladder. There was a difference between the amount of fluid entering and exiting my body.
I saw that doctors attach great importance to this. In fact, after the last medication they gave me, they did not leave my room and waited for the medication to take effect. The treatment worked and my kidneys returned to normal.
I was discharged on a Friday, 11 days after my surgery.
However, on Sunday night I woke up with a high fever and not being able to breathe. I was taken to the hospital again by ambulance. I had pneumonia linked to the anesthesia/surgery. It was a more challenging process than my surgery phase, and I stayed in the hospital for another 14 days. A chest X-ray was taken every morning around five o'clock.
Since I couldn't stand upright on my own, my brother came in with me and held me while the X-ray film was being taken.
OUR EFFORTS WHILE LOOKING FOR A DOCTOR
While I was struggling with pneumonia in the hospital, my sister continued her search for a medical oncologist and radiation oncologist. We decided on a medical oncology professor who specializes in digestive system cancers at Hacettepe University Oncology Hospital. However, we could not make an appointment. My sister made many attempts.
Since we still couldn't make an appointment when I was discharged, I went to a doctor called the "Teacher of Teachers" in order not to be left without an oncologist. However, my meeting with the doctor and his answers to my questions demoralized me and I did not want to go on this treatment journey with him.
The only good thing he said to me was that my body was very strong. And on the same day, miraculously, we received the news that an appointment was made for the afternoon.
(image created by AI)
MY DEAR ONCOLOGIST
We were so happy. Actually, I didn't know anything about this doctor’s approach to patients. While waiting for the examination, I got hungry. My brother bought cookies in a hurry. While waiting with my brother's wife, we started eating cookies. It would be more accurate to call mine a scratch.
At that moment someone passed by and told me to stop eating it. He said to my brother's wife, "You can continue eating." And this person turned out to be my oncologist. 😊
When it was my turn, I went in alone. Because if he said something negative, I didn't want my family to hear it.
He examined all my medical reports asking long questions. I was diagnosed with Stage 2 of Stage 3. But he said, "I'm putting another 30% into his glass and moving his diagnosis to the 1st stage of the 3rd stage." I asked how much was in my glass. He said there was 20% but I made it 50%.
That's when I felt like a bond had formed between me and my doctor. And now I have been a patient of my oncologist for 15.5 years. He is a successful scientist who has risen very quickly in his academic career. I love and trust my doctor very much. It was a great chance to be his patient.
First, he arranged for me to meet with a dietitian who works with cancer patients. I learned about dumping syndrome from this dietician. I'll try to explain this later.
Later, he asked me to take the pathology samples from the hospital where I had the surgery and bring to a professor in the Hacettepe Hospital pathology department for re-examination.
At this stage, I would like to talk a little about our healthcare system so that what I wrote about hospitals and doctors can be more understandable.
OUR HEALTH SYSTEM
I think that the family medicine system in some countries makes it difficult or even almost impossible for the patient to reach a specialist doctor, and causes serious loss of time to the patient on such a vital issue as human health.
There is a family medicine system in our country, but no matter what the disease is, we do not have to get approval or referral from the family doctor to go to specialist doctors.
In the current healthcare system in Turkiye, there are State Hospitals, Private Hospitals, and most importantly, University Hospitals affiliated with Medical Faculties. We have the opportunity to visit specialist doctors of our choice (except State Hospitals) whenever we want, whether they are Associate Professors or Full Professors, for a fee, depending on the doctor's patient density.
Apart from hospitals, there are also private practices belonging to doctors who work with or without an affiliation with a hospital. University Hospitals are always overcrowded as patients come from all over Turkiye.
Since I prioritized and chose a doctor for the first time for myself, these opportunities were very useful to me. I live in the capital Ankara and I was lucky because there are very good hospitals here.
The doctors I chose or referred to by my oncologist during my treatment process, including the doctor I went to for my thyroid nodule and the doctor who diagnosed me with cancer, were doctors who were trained at Hacettepe Faculty of Medicine, the number one medical school in Turkey, and had academic careers. The doctor who performed my surgery also graduated from the same Faculty of Medicine. This not only gave me confidence but also ensured that I did not waste time in my treatment.
In order to avoid any misunderstanding, I should also point out that there are many important and high-quality medical faculties in our country. It is up to the patient's choice which one to go for. You can also receive free treatment from specialist doctors in these hospitals. Chemotherapy and radiotherapy are free regardless of hospital. During my treatment, some fees were charged in private hospitals.
Another important issue is that you do not have to wait months for advanced examinations such as PET CT, MRI and CT scan. In University Hospitals, such examinations are performed at a smaller cost compared to private hospitals and imaging centers. If you are diagnosed with cancer, PET CT is free in all hospitals.
BEING BLAMED FOR HAVING CANCER
While I was waiting for the pathology results, people came to visit me. During one of these visits, a group of people not very close to me blamed me for having cancer. They acted like I deserved cancer. At first I was astonished, then I was very angry. I couldn't let my mother be upset any longer. I asked them to leave. They were very surprised by my attitude.
Why were they surprised? Were they expecting me to say “you are absolutely right”?
DOING RESEARCH ON THE INTERNET
Naturally, we want to know about our diseases.
I gave up when I saw a lot of information pollution on the internet. I started asking my sister what I was wondering about. An expert on the subject could give the most accurate answers. During my treatment, a CT scan noted bone thickening on the side of my left hip. When I looked on the internet it indicated bone cancer.
When I asked my oncologist, he said, "Tell me, on which side do you get the B12 injection?" I said from the left side. "That's why this thickening is happening," he said.
I never looked at the internet again.
MY FIRST CHEMOTHERAPY
After the pathology tests were obtained, my oncologist prepared the chemotherapy protocol. Before starting chemotherapy, we were given training on the issues we should pay attention to during treatment by competent nurses. The drugs given were more bearable with side effects than the heavy chemotherapy given after my radiotherapy (which I will describe later). It was a treatment in which no hair fell out, but that didn't matter to me anyway.
There were many side effects such as nausea (excessive retching since I couldn't vomit because I don't have a stomach), endless abdominal pain and diarrhea, weakness, headache and so on. The thing I had the most difficulty with was eating and drinking. Even if I forced myself to eat a bite, in addition to difficulty swallowing, this caused me to become bloated and I was in a very difficult situation to bear because I could not vomit.
THE FEELING OF ENTERING THE GRAVE
Meanwhile, I had a psychological problem. When I lay down, I felt like I was in the grave. It would be easier for me to deal with this if I just felt it. But, I was also experiencing things like severe depression, tightness and heaviness in my heart. For this reason, I spent the entire treatment period sitting, even though I was in no mood.
This situation still exists for me even after 15 years. I have been someone who has only been able to sleep with sleeping pills for more than ten years and I can never lie down except to sleep. When I lie down to sleep, it starts within a minute or two and all I can do is to wait and say it will pass. It goes away after a while. (I will explain my psychological treatment later).
I HAVE ANOTHER PHOBIA
One month after I started receiving chemotherapy, my first control CT scan was taken. This was the first examination result I received myself, prior to seeing doctors, other than the pathology reports I received (and talked about earlier). In the report, there was a mention of a 3.5 cm long mass in my liver.
After trying for three or four days, it was understood that that part of my liver was the surgery area. But unfortunately, this situation caused me to develop a phobia of receiving test results. For the next 15 years and still while receiving my test results, I am having a hard time even though I seem calm on the outside.
I planned to receive as many medical reports as possible without being alone. A very dear friend of mine came with me and supported me for years.
Medical examination results have been provided online for 3-4 years now. Now I look at the test results while video chatting with my sister, Sevtap. There are also times that I have to look at them on my own.
MY RADIOTHERAPY AND CHANGING CHEMOTHERAPY MEDICATIONS
Meanwhile, I had received the 3rd dose of chemotherapy. However, my oncologist said, "I can't risk you," and made changes to my chemotherapy drugs after radiotherapy. It consisted of the harshest drugs that could be given. Since the new medications affected my veins so much that there would be limited vascular access, a subcutaneous port (a type of catheter) was inserted into the area on my upper right chest.
At this stage, my radiotherapy started. Since the latest system radiotherapy machine was in a private hospital at that time, my treatment was performed there. My doctor who performed my surgery said that a radiation oncologist was very important. The beam program was conducted by Professor at Hacettepe Oncology Hospital, with whom we met before.
I received radiation for 23 days and also continued to receive light-dose chemotherapy with a pump attached to my port. Sevtap came to Turkiye towards the middle of my radiotherapy.
Even if my sister was far away, she always gave me the greatest support, along with my mother. I want to say once again that I am grateful to her. We spent the remainder of my radiotherapy and the three-week break at the end of the treatment together.
I even knitted a beret and scarf for her as seen in the photo below. 😊
I haven't had the opportunity to write so far, but interestingly, I was a very high-spirited and cheerful patient. The joy part couldn't continue due to my new chemotherapy, but it didn't dampen my spirits at all. I don't know if I could have endured that heavy chemotherapy if I had been depressed.
MY NEW CHEMOTHERAPY After my first session with new chemotherapy drugs, I did not see any side effects for 2 days. In the meantime, I shaved my head. But on the 3rd day, it hit me so hard that there is no way to describe it.
Can a person's breath hurt them? Is contact with another person painful enough to tear your flesh apart? Yes.. Imagine that I was taking 14 different medications against side effects. I cannot find words to describe the pain I was experiencing.
Death felt like salvation.
I also had to have an injection in my abdomen for ten days to raise my blood values. All roads ahead of me led to pain. Because of the extreme irritation of my esophagus, the things I ate and drank were literally tearing my esophagus.
As the chemotherapy sessions continued, skin discoloration began to occur, starting from the tips of my fingers and spreading to my entire hand, as well as on my face. It wasn't a big deal, but neuropathy had started in my hands and feet.
The numbness in my hands went away, but the numbness that started from my toes and continued to the top of my ankle did not go away. In fact, because of this numbness, it was 8 years after my treatment, I think I fell down at home and broke my ankle. 6-7 months ago, I fell headlong while getting out of a taxi. While everyone was trying to help, I was looking at the beauty of the sky :-)
MY RITUAL OF EATING (NOT EATING)
In the last days of the three-week break period given after each chemotherapy session, I dragged my feet and went to a restaurant close to my house and ordered food for myself. I would chew a piece of meat, but since I couldn't swallow it, I would put it on a napkin, pay the bill and go back home. This felt good because I could do something about normal life on my own.
MY STRUGGLE WITHDRAWING MONEY FROM MY BANK ACCOUNT
One day, I needed to withdraw money from my bank account.
The clerk at the counter looked at my photo on my ID card and said that I did not look like the person in the photo. I told him that I was being treated for cancer. I showed my professional ID too, but it didn't work. I showed the ID of my workplace, but it didn't work.
He stubbornly did not let me withdraw funds. I was very tired of both staying up and my efforts. As can be seen in my photo, this was way too much. I was only able to withdraw the money after talking to the bank manager.
PEOPLE'S ATTITUDE TOWARDS ME
After this bank incident, I would like to talk about some of the ways people behaved towards me.
Those who cannot look into my eyes because the name cancer is associated with death, those who do not know what to say... And even those who change their ways on the street...
Look, friends, look into our eyes. We don't hesitate to look into your eyes, so you don't hesitate either.
And please do not use the cliché that we too can die at any moment to supposedly console us. Sometimes it is best to remain silent rather than thoughtlessly comparing the abstract risk of death to people with a concrete disease.
Of course, the behavior towards me was not limited to these. I will explain it later when its time comes.
END OF MY TREATMENT
As my chemotherapy sessions increased in number, it became physically unbearable. Until that day, I had done whatever my oncologist had said. I had check-ups every month. Drinking the medicated water for the CT scan was almost torture. During my last CT scan, my stomach was in excruciating pain and it took a lot of effort to stand still during the scan.
When the test results came out, my oncologist said, "I will give you another dose of chemotherapy, then we will evaluate it according to the results." I said I don't think I can take it anymore.
I think I had already exceeded my physical limits and my doctor accepted it. It was like a miracle. My treatment journey, which lasted nearly a year after my diagnosis, had ended. I, who did not cry when I was diagnosed, cried with joy because my chemotherapy was over.
My mother and I showed joy when we left the hospital only. Because I had to think about the patients waiting for their turn for examination around my oncologist’s office. My joy could have been their sadness.
Years later, my oncologist told my brother, who brought a patient to him for treatment, that “we had put Mehtap through a lot”.
Treacherous cat 😊 Just kidding. Thank you very much for being my doctor...
COMMUNICATION WITH OTHER PATIENTS
I think this is very important. We see that we are not alone, and since we are all fighting cancer, we become more sensitive about understanding each other. We can also learn useful things by sharing our experiences.
Last year, while waiting my turn for a CT scan, I was chatting with a lady older than me who had stomach cancer and had just completed her treatment. She said she loved salmon but couldn't swallow it. I told her to chew for a long time and if she still couldn't swallow, she should take it out without swallowing. She liked this idea very much. I still do this even now.
Once, a person who had stomach cancer like me said that coffee was good for digestion. Coffee really feels good when I have bloating.
Generally, patients ask each other how long they have had cancer. In the middle of my treatment, I had a conversation with a patient who had a 4.5-year history of stomach cancer. At that time, this period seemed incredibly distant to me, but it also gave me morale.
However, I have a dilemma when answering people who ask how many years it has been for me,
When I say that I have been living for a long time, this can cause different reactions in patients. Some of them find morale and strength in this.
However, it can cause demoralization, especially in people who are in the treatment phase or have metastases. Of course, I can't read their thoughts, but I can see from their behavior that they are demoralized.
That's why I'm very, very careful about what I say to other patients.
SCIENTIFIC ADVANCES
I received conventional chemotherapy and radiotherapy treatment 15 years ago. Science is advancing so rapidly that there are now new treatment methods. For example, Cyberknife, the world's first and only robotic radiosurgery system.
There are also great developments in radiotherapy machines. While CT scans of the lower and upper abdomen and thorax used to take a long time, now they are completed in 5 minutes. Instead of closed MRI machines, which give patients a difficult time, there have been machines with open sides for a long time.
There are chemotherapies with fewer side effects that are given orally in the form of pills rather than intravenously. Of course, I don't know all of them, but I greatly appreciate all the scientists who work devotedly and I would like to thank them, especially my sister.
MY SISTER'S PLATFORMS
At this stage, I would like to say that the platforms about cancer, led by my sister, are very important.
It fulfills a very important mission for social awareness, together with patients and their families. While informing the society, she does something that has been rarely done before by involving cancer patients and their families in her work. While advocating for cancer patients, she makes them visible to society.
I am proud of her and I sincerely congratulate those who took part in these activities by her side.
This guest blog consists of seven parts – hyperlinks will be added as they are published in order:
PART I – INTRODUCTION
PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)
PART VI – CURRENT STATE & FINAL WORDS (please see here)
PART VII: SILENCE OF THE MOTHERS (please see here)
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PART I – INTRODUCTION
Hello, I am Mehtap Savaş, older sister of Professor Dr. Sevtap Savaş.
I greet you with love and want to share my stomach cancer story and experiences with you (I was diagnosed in 2009).
With this, I hope that people who have not encountered cancer can understand us, at least a little bit.
IS IT A HOSPITAL? MY GOD! NO!
First of all, I would like to tell you about my hospital phobia and how I came to the diagnosis stage despite this phobia. When I was 5-6 years old, I had a tonsillectomy performed under local anesthesia, which made me very afraid. When I was taken to the operating room for the operation as a small child, I struggled so much and caused difficulties for the doctors that my surgery could only be performed on the third attempt, at a different time. After this traumatic experience, I developed a hospital phobia and when I grew up, I almost never went to the hospital unless I had to.
MY DEAR SISTER'S ROLE IN CANCER DIAGNOSIS
I had nodules in my thyroid. My beloved nodules are a big family that has become more and more crowded over the years. My sister was insisting that I go to an endocrinologist for a very long time. Due to my hospital phobia, I was stubborn and did not go.
Finally, as a result of my sister's persistent efforts, I made an appointment.
When my doctor saw my tests indicating extreme anemia, he asked me directly: "Haven't you ever thought about which cancer I have?". I was 41 years old and even though I had stomach pains, I didn't even think about it. Thanks to the gastroenterologist who referred me to the doctor I went to for a completely different illness, it was understood that I had stomach cancer.
If I am alive today, I owe it to my sister, and on this occasion, I once again express my endless gratitude to her. If I had not gone to the doctor (endocrinologist) at her insistence and had not been directed to another doctor thanks to the endocrinologist's attention, I would have passed into a stage from which it is unlikely to return.
(My mischievous sister :-). I took the photo when I was discharged from my second surgery. The one in his hand is the name card that was put on my wrist in the hospital. :-) )
MY DIAGNOSIS PHASE
First, I had a colonoscopy with endoscopy at the university hospital and samples were taken from my stomach for pathological examination. Later, in our healthcare system, patients generally receive their examination results from the relevant unit and show them to their doctors, so I picked up the pathology result in the same way.
BRAIN ENCLOSURE
When I looked at the pathology report, I saw that the result was cancer.
First I took one step to the right, then one step to the left. Then I stopped where I was. I don't remember how long I stayed like that. At this stage I had a brain eclipse. I couldn't think of anything. Then suddenly I came to my senses and started thinking about what I should do. I am a lawyer and therefore I take immediate action and focus on results.
It occurred to me to look for the university room of the doctor whose private practice I went to. Luckily, he was in his room and it was confirmed through his words that I had stomach cancer. While he was trying to explain to me that I had a chance of recovery with treatments such as surgery and chemotherapy, I asked what I should do. He said “let's get an MRI first”.
I went outside and realized at that moment that I didn't want to be alone. I called my office-mate at work, whom I love very much, and told her about the situation and asked if she could come pick me up.
While I was waiting for my friend, I saw that I was standing under a mulberry (a type of fruit) tree and started eating mulberries from the branches I could reach.
I was diagnosed with cancer, which is associated with death, and I was eating mulberries, not knowing what would happen to me.
FIRST STEP TO TREATMENT
While I was thinking about what path I should follow, my friend came and, thanks to my friend, I took the first step I needed to take in my cancer treatment journey.
She said, "If you trust me, let's go to my brother." My friend's brother was a general surgeon who was the clinical chief at a State-owned Training, Research and Oncology Hospital, and he performed my mother's un-critical surgery about 2.5 months ago. He said yes, there was something, and further examinations began the next morning.
HOW WAS I GOING TO TELL MY FAMILY?
This was the issue that challenged me the most at that moment.
How should I say it? First, I called my brother, who lives in another city, and explained the situation to him. Then I went home.. The hardest thing was to tell my mother and I couldn't find the right words.
I finally told my mom that the results were back, and I was diagnosed with cancer.
When I think about my mother's reaction, she never cried, never showed her sadness. And she said to me, "My inner voice tells me that you will get better, don't worry, we will get through this too." My mother was a woman who was strong as a mountain and always supported her children. She always hid the pain inside her and never showed it to me.
The strength of will shown by a mother whose child was diagnosed with cancer was incredible.
Of course, I also had to tell my sister about this result. I sent her a message and wrote that the results were not very good. My sister remained silent for a while. Then when she called, she said she wanted to come, but I told her there was no need to come right away.
My MoM I will tell you about my dear mother, who passed away from cancer 3 years ago, and how she took care of me carefully in a separate article, as I do not want to squeeze in between the lines in this article.
